I was born with Truncus Arteriosus, and am 30 years old. I've had a number of repairs (PVRs, and AVRs). My main concern is that I've been having increasing symptoms. Initially I had worked up to a good exercise regimen since my last PVR (in '05). But in 2007 I started having chest pain and lightheadedness towards the end of the cardio part. It progressed so I had to do less and less, the symptoms came on sooner, and were followed by fatigue and abdominal swelling. It's gotten to the point now, where I'm fatigued most of the day (I do feel better on days I rest), I can do very little activity without getting short of breath and severely lightheadeded. I get pain up the left side of my jaw and down my left arm. I also had to start sleeping with my bed elevated, and I have increased my pillows on top of that to 4 pillows.
I have mild narrowing at the top of my conduit, mild pulmonary artery stenosis. I have severely increased velocity through the conduit with exercise. I have mild aortic stenosis. (My mechanical valve is 20 years old). I have trivial aortic regurgitation. I also have diastolic dysfunction and right volume overload. The last echo indicated increased mitral valve velocity, and possibly trace regurgitation.
Despite my severe symptoms, and all these issues, my cardiologists can not pin point what exactly is causing my symptoms. I'm wondering if the aortic valve is going bad. Is it possible to be severely symptomatic without obvious clinical signs? Or is the diastolic dysfunction and right volume overload indicating there is something wrong with the aortic valve? The diastolic dysfunction only started showing the last several years. So it has not even been a direct result of all the other surgeries. And I believe the diastolic dysfunction is progressing.
Your symptoms sound quite serious. It sounds like both the right and left sides of your heart are not functioning properly, if you have orthopnea (sleeping on 4 pillows) and abdominal swelling. Diastolic dysfunction can be present in patients who have had multiple heart surgeries, or who have severely leaking or blocked valves. If the conduit from your right ventricle to the pulmonary artery is narrowed and has increased flow velocity and does not have a functioning valve in it, then that is the likely cause for some of your symptoms. Your right ventricle cannot send adequate blood flow through the lungs when the conduit is blocked and leaks blood back into the pumping chamber. This limits your cardiac output. You should be evaluated by a specialist in adult congenital heart disease. You may need a replacement of the right ventricle to pulmonary artery conduit with a valved conduit. Or depending upon how much blockage is present, you may be a candidate for a catheter based therapy to implant a stent with a valve in it (Melody valve) in the conduit you have now. Of course it is also critical to be sure that your prosthetic aortic valve is functioning appropriately. If regular echocardiography cannot assess this accurately, then a transesophageal echocardiogram (TEE) may get better imaging of the valve. If you have not had a recent cardiac catheterization, then that should be considered a priority here to check your current heart pressures and valve functioning.
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